Latissimus Dorsi Breast Reconstruction
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Hi everyone, what a great forum this is! It is encouraging that I am not the only one in this boat, and so nice to have people to talk with who are not going to turn around and tell me that if I had only used such-and-such essential oils or a certain diet, I would have been fine. Sheesh.
Anyway, I am hoping to get some advice since my reconstruction is not going well.
First, my history: I am BRCA2 so when a biopsy revealed IDC, I went ahead with a bilat. mx with immediate reconstruction with TE's. Three weeks later I was back in to have the left side removed due to infection. After waiting 3 months, I had the TE reinserted. Three weeks later I was back in the hospital with sepsis, so it had to be removed again.
The infectious disease doc feels that I am colonized and that all we need to do is give me two antibiotics before the next surgery and try the TE again. My PS does not want to go there. He is recommending a LD instead.
So, I am pretty convinced that the lat dorsi flap is the way to go on the side that is getting infected all the time, but I am wondering what to do with the other side. The current plan is to start the fills since that TE is doing OK--it has been there for 5 months, just waiting to be used. I would then do the exchange of the TE at the same time that the LD with an implant is done.
One of my concerns is my back. I have a slight scoliosis and had a terrible time with mid back spasms after my first two surgeries. My chiropractor is concerned that messing with the lat. dorsi muscle on one side might pull my spine out of alignment and give me troubles down the road.
I see that some of you have had the LD on one side and TE --> implant on the other.
- How has that been?
- Were the results pretty even? I am wondering what it will be like to have 2 different kinds of reconstruction on the 2 sides.
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Joanne, I don't get gas with my probiotic. I have read that they can give you some gas when you first start using them, but that side effect may go away over time. You might want to try using GasX (simethicone) to help decrease the gas.
You might also want to ask about starting on something that will also restore the gut to a happy environment for your normal intestinal flora. My integrative medicine doctor had recommended Glutagenics, which is a powder that you take once a day (just a teaspoon in water) until the bottle is empty. You can get that online if your docs think it is a good idea.
Pain meds bind me up terribly--it is a shame that doctors don't consistently prescribe stool softeners when they order narcotic pain killers! I take a generic version of Colace (the plain kind, NOT the peri-colace) whenever I am taking the narcotics (like Norco or Percocette). I also have started using Metamucil daily. The nice thing about Metamucil is that it helps either condition: loose or hard.
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Teacherjp - I'm here too after an infection killed my first reconstruction attempt. I had bilateral LD flap surgery and I'm currently working on the finishing touches (I hope). I too have mild scoliosis and it had been a non issue. I believe the PT I received before and after made a big difference. I haven't, however, had any problems related to my scoliosis and my circumstances may not apply to you.
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Jo, I lost most of my mind somewhere in the last two years. I'm surprised I can type a coherant sentence. I'm glad to hear the redness has gone and stayed away.
teacherjp, welcome. Is your PS planning an LD flap without a TE on that side? Just going straight to an implant? Most of us had a TE placed at the time of the LD flap then had that exchanged for an implant later. I had that on the cancer side because radiation therapy ruled out just getting a TE and implant. On the other side where I had a prophylactic Mx, I had a TE placed at the same time that I had the LD flap and TE on the other side. Both TEs were exchanged for implants about 7 months later. So I did have a different procedure on each side. My symmetry isn't perfect, but it's acceptable. I don't think anyone would notice the difference in clothes. I have one more surgery to build nipples, and my PS might try to even it out a bit more at that time. I'm not sure what he'll do. We have to let things "settle" for another 6 weeks before we can decide on a plan. I don't have scoliosis, but I was also concerned about my spine being pulled out of alignment with the loss of the lat on just one side. It has not been an issue for me.
Speaking of my exchange surgery in June, I got an explanation of benefits from my insurance yesterday regarding the charges for that surgery. They covered the surgery, but (wait for it) they denied coverage for the implants! Yesiree! They've paid for at least part of everything in the reconstruction process starting with the first surgery back in November, but some genius has decided that the implants that complete the process aren't covered!! I think they have trained monkeys reviewing claims. It was my understanding that they have to cover reconstruction after breast cancer by law. So I'm sure this will get straightened out. But seriously??? Needless to say, I will be making phone calls tomorrow.
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Thanks for the feedback, ladies.
The PS is planning on going directly to an implant with the LD flap. He said that because of the skin flap, there should be enough skin to avoid the TE. (I did have a skin-sparing mastectomy with the first TE implant.) I suspect he is trying to limit the future surgeries because of the repeated infections--I am sure I have him spooked. There was no good reason why I got infected twice, and the second time with sepsis. I don't EVER want to go there again.
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Tabbies - I've been arguing with my insurance company because they think that the LD Flap & TE placement should not have been done at the same time and it should have been 2 different surgeries. They're talking to a person who just finished surgery # 8. They're out of their minds...and they know it. I'm certain it will be resolved on appeal. It's all part of the game.
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Joanne, I am so relieved that things are looking better! Whew.
Regarding the sports bra, I really hated the post-op bra that they sent me home with. It was pretty darn ugly and not very supportive (I am between sizes).
What I really like is a zippered-front sports bra that I got at Kohls. If you google "Kohl's sports bra zipper" you'll find it. I got the "Champion Bra: The zip front-closure high-impact sports bra B7920-Women's" (grey and white).
I like it because it gives me decent support. Because it is a zippered front, I can get in and out of it more easily than most other bras. It is a little high such that it doesn't work with any shirts that are low cut, but at least it is really comfortable and gives me a nice hug to keep swelling down.
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Jo that is great news that most of the graft took!!!!
I hope you get a little better each and every day.
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Jo, I'm so glad to hear you're finally on the mend. I'm sorry it continues to be such a long haul. I hope you are able to relax and just take a day at a time. I understand about not putting any stress on the graft, but can't you even have PT to help you're back pain? It seems like there might be something that can be done for that without stressing the graft.
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Jo - Finally some encouraging news. This isn't a race as we all know.
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Joanne, I am so glad to hear that things are progressing, albeit slowly. You have been in my prayers.
I can understand the feeling that your PS is not used to failures. I think mine is the same. He is great technically, but he missed out on picking up compassion when they were handing that out. I had a bilat mast and 3 weeks later one side was infected. The first words out of his mount when he saw me was "This is a disaster!" (Not exactly what a patient wants to hear!) I am a tough cookie, so I took it calmly and we figured out what to do next (remove the expander).
Three months later a new expander was put in. Three weeks later I was back in the office with another infection, and this time I went septic, so out that one came. I was pretty messed up emotionally after that--I think I was experiencing post traumatic shock. I wept as I told my story to the office nurse at my first post-op visit (doc was still on vacation), and when I saw him a few days later there was no "I am so sorry this happened" or anything. I had some questions about what had happened in the hospital and I got pretty teary again. All that did was terrify him. I ended up talking to the nurse again, tearily telling her my concerns.
From then on I started taking my husband with me to all visits. We are all happier because I feel protected to have hubby there to ask the questions, my doctor is protected from my emotional mess, and I find that the PS gives me MUCH more attention with my man at my side.
I don't want to change surgeons because I do believe my doctor will do a good job with the surgery. I am working with my regular doctor and an infectious disease team to figure out why all the infections (they have a theory). Also, I can't face the prospect of finding another PS and having to make more decisions with whatever he would come up with. God will have to take care of the rest.
At present, I am planning to go ahead with the fills in the expander on the right and the latissimus dorsi on the left (the side with the infections). He plans to go directly to implant with the LD, and the swap on the other side would be done at the same time.
The only thing that I am still concerned about is the possibility of back problems with the LD on one side only. Anybody have an LD on just one side? Any problems down the road? I don't want to have that much invasive surgery on both sides, but if I am going to have back problems, it might be worth it.
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Jo - The idea that your PS is in some way disappointed with you is not sitting well with me. When things go wrong and they act as if they've never seen the problem before or it's so incredibly rare, well, I'm just not sure of that. It would bot be good for business to acknowledge the actual frequency of complications. Although I'm glad my PS was confident of my outcome, it would leave me feeling somehow to blame if things went wrong. And honestly, how in the world could your PS say that a surgery would not worsen your LE??? Of course that risk is there. The risk is there that I'll develop LE with each successive surgery and of course it can worsen it. The loafs under my arms don't bother me. They're slight bulges at best and make shaving easier. They have reduced in size very very gradually. I am still confused by something. Most of us had the LD Flap as part of reconstruction to support implants or to create smaller breasts. And yet you have not had reconstruction. What was the reason for your LD surgery? You probably mentioned it but it elluded me.
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Jo, I'm glad to hear you're having some progress finally. If your PS is embarrassed by you, he's a jerk. Does he think he's perfect so none of his patients could possibly get an infection? Sheesh. Reading your entire narrative makes me cringe. You have been through so much. I also don't like hearing that angiosarcoma can hide under implants. I don't care how rare it is. I already have a really rare form of lymphoma that I was assured that I couldn't possibly have since it was so rare. Yeah. Right. I guess you and I should go buy lottery tickets because we're hitting on long odds. I just hope you've seen the last of the angiosarcoma, and everything heals up nicely from now on. Regarding the "loaf," I could feel some of that under my arm right after the surgery, but it never was huge. Even now, if I pay attention, I can feel a bit of it, but it's more like a tightness than a real swelling. I just don't know what to think about yours. Regarding lymphedema, I think what your doc meant is that there's no statistical evidence this procedure makes it worse. That doesn't mean it won't get worse. I hope not.
teacher, it sounds like you have a PS who really missed the boat on relating to other humans. Mine is good in that regard, but my MO leaves a bit to be desired. It's not that he's cold or rude. He's just very matter of fact. If there are things that he can't do anything about, like the wretched hot flashes and other estrogen deprivation symptoms, he just says that. One time he did say that, "Women have been going through menopause for millennia and just dealing with it." That remark did piss me off just a tad. But usually, he's not that bad. All I really want is for him to say he understands it's tough, but he and his staff will help me get through it. But he never says that. He's the best of the best around here as far as treating the cancer though. So, I stick with him, and cry on somebody else's shoulder like my poor PCP. I had a good rant in her office the other day.
Btw, don't worry too much about problems because of just having the LD flap on one side. I only had it on one side. So far, I've had no issues at all in that regard. No back pain. No arm weakness. Nothing. I'm back to doing everything I was doing including swimming which was one of my biggest concerns. I understand your worries though. I was the same way. And again, it's a matter of most people not having any issues not a guarantee that no one does. Unfortunately, there are no guarantees, but I guess we all know that by now.
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Jo - It all makes sense. It's just messed up that you have to go through all this even without reconstruction.
Ladies - I really like having nipples. Even the headlights are a welcome change. You would not notice them unless you're really looking for them.
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Very torn on what type of reconstruction to go with, DIEP or lat flap and wondered if anyone
would mind sharing your thoughts and experience if you have had both or either. I have had radiation to left breast with lumpectomy so some type of flap is necessary, I have been told by PS that either bilateral DIEP would work with small results and probable need for implant due to not having much ab tissue and already very small breasted, or latissimus dorsi flap. The lat flap worries me as I have read about possible weakness from losing muscle, but with DIEP also read there can be chronic, permanent abdominal swelling below incision...which are you most satisfied with regarding results, and which do you think was overall a better surgical choice.
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I have a friend who had DIEP and she had great results. Obviously it's more natural than implants. When you gain weight, you gain it in your boobs, too. But I'm afraid of the long recovery time because it seems to take me longer than most people to heal. I'm still hoping I can get an implant on my radiated side, but the PS isn't sure it will hold since I had a stitch pop several months ago and had to start over with a new expander. Which is why I'm on this forum, researching lat flap.
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Had my lat flap surgery in January. Does this loaf under my arm EVER go away?
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Thanks Joanne!
It is not red, but it hurts!!! Its soft. And is just getting bigger. My DH actually said last night, "oh crap, ya look like something shifted!" I thought it would go down not grow! I asked the PS and he said take motrin for 6 weeks. What!???? But I will try it. Glad to know I'm not the only one who has to deal with this!!!
Amy
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JoAnne,
PS is also talking about fat grafting for some issues. Thanks so much for all of the information you have shared!
Amy
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Amy, I have the loaf and had surgery in January. I am going in for a revision to get rid of the loaf on Sept 15th....I am praying this will be my last surgery!!!
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OK girls I am reaching out to you all for help. I have finally after 19 months have a reason my arm has not function right since this Lat surgery. My Long Thoracic nerve is dead. More like it has been severed. I know in my heart it is from my Lat surgery as it worked fine before but not after. I am trying to find a surgeon who deals with these big nerve issues. My Plastic surgeon has NOT been helpful AT ALL in fact I feel he has tossed me out as he has his pay and doesn't care about me anymore. ANY of you that have a good relationship with your PS can you ask them if they have ever heard of damage to the Long Thoracic nerve when doing this Lat transfer. I know it is VERY RARE and others going forward please do NOT think this will happen to you like I said VERY RARE but I cant get a Doctor in my city to admit it happened with this surgery. SO like I said if you talk to your PS see what he thinks and send me a PM please........ Thanks I am at a LOSS:-(
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Tangles, - I will try to ask my ps when i see him in a couple weeks.
Jo, - I am glad that you are on the road to recovery!
Leslie, - I, too, heard about long recoup with diep, and i was concerned about having 2 very sore areas. I heard that even walking stairs would be difficult for a while. I didnt really have a choice, and had LD on the one side that had been radiated.
I am still not feeling 100% after 3 months, but surely a LOT better. Will need fg to even things out since i went directly to implant and it is smaller than the other side. I also dont know what ps has planned for nips. I'd probably be happy with tattoos, but I dont know if that is his way of completing the work done.
WW, - did your ps give you choices?
Teacher, - I dont have back problems, but still working on rom, occasional shoulder pain and gaining strength.
2T, - I dont think even the best drs understand what we feel, unless they, too, have been through it themselves!
Wishing all here a good Labor Day weekend!
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Tangles, I am so sorry for your troubles. (And thanks for reminding us that just because we saw it here does not mean it will happen to us! Forums tend to have a higher percentage of troubles than are actually present in the full population.)
Anyway, damage to the long thoracic nerve is listed as a complication to the lat flap procedure on page 482 of SRB's Surgical Operations: Text and Atlas, found here:
https://books.google.com/books?id=ZN7fBAAAQBAJ&pg=...
(If the link doesn't work, just Google "SRB's Surgical Operations: Text and Atlas page 482". There is a "Complications" text box on that page.)
I am not sure if this link is helpful, but it sounds like physical therapy can be helpful to get complimentary muscles to help, and there are surgical corrections that might be used if nothing else works. http://www.ncbi.nlm.nih.gov/pubmed/10613149
I wonder if starting with a physical therapist might be a good place to start. Then that therapist could help you find the right doctor? (neurosurgeon? sports medicine? trauma surgeon?
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theacher thatnk you so much for this link. I wish I could print this page out!! I have been to 5 PT and no luck so seeing a neuro surgeon the 21st
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Tangles, if you take a screen shot of the page, you can print out the screen shot. On a Mac, click command-shift-4 to get a tool that will take a screen shot of whatever you select. You can always google how to take a screen shot if you need more help.
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Tangles, I was also thinking if a neurosurgeon can't help you, an orthopedic one might be your next best best. Hard to know which one will have the most expertise.
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I am on windows 7 & android cant screen shot it:-( I have seen 3 orthopedic dr's last one said he would need to use my peck muscle to fix it, but that is not an option because of my implant. so off to the Neursurgeon
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Hi ladies! It has been awhile since I stopped by to write. Last time I was telling y'all about pain in shoulders and neck. Well, it got worse. I tried to tough it out for weeks when I should not have. Eventually ended in a visit to a therapist. She was clueless and even said she had no idea why I could not lift my head from a laying down position. Yes, it was that bad. I had to roll face first off the bed and slowly lower myself to the floor. Finally I got in touch with MD on Monday, and they said get here. I saw my RO who ordered X-rays and blood work to rule out mets. I also went twice to their PT department. All clear, and now I have a print out of the exercises I have to do. Already feeling better. So what happened?
I pulled my front neck muscles lifting too much weight around week 5/6 post op. That weight was my 2 year old. I thought I was fine! I was putting her in and out of the car seat of my SUV. And then....the great tantrum in the Academy store. She was CRAZY! I had to hold this mad child in my arms completely flexing every muscle to keep her secure. Needless to say I left my shopping cart and took her straight home. But! As soon as I sat in the car, my front neck was really hurting. And then, the back of the neck and shoulders took over until they too had enough. So listen to your doctor when they saw no lifting over x amount of weight!!! 2 months later, I am just now turning the corner. I completely feel for anyone who has injuries their neck for sure. This was all new to me. Hope that helps someone avoid this! Other than that- all good!
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Jo, I'm so glad you finally got some help with the loaf. I'm sorry to hear the LE therapist is also going through this crappy bc adventure. I hope there's a substitute available so she can take time off as needed, but you and others can still get therapy. I'm familiar with the chip bags. I use one along with various other foam pads in a wrap I put on my foot and ankle every night for LE. That was a parting gift from my ovarian cancer surgery. A good LE therapist can work wonders. I can't believe your PS is so clueless in this regard.
I was greeted by some interesting news on the front page of the paper this morning. My MO is running for governor. If he wins, I'll need a new MO who is proficient not only in treating breast cancer but also Waldenstrom's macroglobulinemia. Most of them have never even had 1 patient with it. In the meantime, I wonder how well my current doc will be able to concentrate on treating patients while conducting a political campaign.
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Jo, I was thinking about your "iron bra" comment. I don't think it's just the lat flap that causes that. I have just as much tightness on my non-LD flap side where I just have an implant under the pec muscle. I have a feeling like someone is constantly squeezing both of my boobs. It's kind of ironic to constantly have that sensation all the time but have no feeling at all on the skin surface. I'm hoping the squeezing might go away eventually. Does anyone know if it does?
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